Tuesday, November 19, 2013

No, It Is Not Okay To Grieve (Because Nobody Died)

Parents of children with disabilities are often told, when their child is first diagnosed with a disability, that it is okay to grieve the loss of a "normal child".  I've even seen it taken a step further, with suggestions that parents of children with disabilities go through the same five stages of grief that people go through when someone dies - denial, anger, bargaining, depression and finally acceptance.

I take serious issue with this terminology.  First and foremost, because nobody died.  Despite what mainstream media and organizations may say to the contrary, your child is still alive and (most likely) thriving, just in a different way than you expected.  Equating disability to death and using the exact same scientific grief scale implies that those two are one and the same, equally horrible outcomes and that people should and will react to a disability diagnosis the same way they will react to a death.

To be clear, I'm not talking about parents whose children suddenly acquire a disability.  That's a whole other can of worms.  It's different in that situation, because there is a normal child to grieve.  And though it's true that no one died in the traditional sense, that child will never be the same.  Their nondisabled self, for all intents and purposes, is dead.  And it doesn't make their life any less worth living, but it does radically change things.  They already had an established life, a nondisabled life, and now they have a completely different life, a new life.  So in that circumstance, I think it's acceptable to grieve.  But for disabilities that are present from birth or very shortly after, like Down Syndrome, or cerebral palsy, or autism, there was never a "normal child".  This is your child's default setting.  This is the way your child always has been and always will be.  Grieving for a "normal child" implies that there was a "normal child" to begin with - and with a lot of disabilities, that's simply not true.

When you decide to have a child, by whatever method you choose, you are not choosing to have a nondisabled child.  Even adoption is not foolproof - there may be a disability that is not apparent just yet.  There are no conditions you can invoke so that you can avoid the dreaded disability. You are choosing to have a CHILD, period.  If your child has a disability, don't get upset because you didn't get what you wanted.  Your child is not a restaurant meal - you cannot say to whatever babymaking deities you believe in, "I didn't order this" and return it to the kitchen.  You have to go along for the ride - for better or worse.  Grieving a "perfect" child that never existed will do neither you nor your child any good.

What are we telling disabled people when we tell them that their parents grieved as though there was a death?  What are we telling them when this process is actively encouraged as a form of catharsis?  Is it any wonder that Tim Bowers chose to end his life one day after learning that he would be permanently paralyzed?  In our society, disability is a fate worse than death, and disabled people are living ghosts.

I don't want to be a ghost.  I want to be a person.

If you're a parent, and you've felt that grief, it doesn't mean you're a bad parent, either.  But it does mean that you need to think critically about why you felt that grief.  What did you know of disability before your child was diagnosed?  What are the portrayals of disability you've seen in the media?  When the doctors told you, what did they say?  Did their tone convey solemnity, as if telling you of a loved one's death?  Were they afraid to say the words?  All that and more contributes to the idea of disability you form.  Ideas, as any sociologist worth their salt knows, do not exist in a vacuum.  They are influenced and shaped by everything around us.  Take a step back and learn from your children, who are undoubtedly still happy, despite the Big Bad Disability.  Remember that disability is not a deficit or a cruel twist of fate - it simply is.

To parents, I say - it's okay to be sad.  Sad that your child will face a more difficult path than most.  Sad that the world may never see them as full human beings.  But it's not okay to grieve.  Because nobody died.


Anonymous said...

With children who are born disabled I think the parents feel that they somehow caused the disability and go through all the emotions that come with that but I definitely agree that the medical professions terms cause a negativity towards disability. The medical professionals are just doing the best the can though so I really blame their training more.
Side thought, with Cerebral Palsy like yours and mine we were able bodied in the womb and got brain damaged later in pregnancy,during birth,or after.

Karen said...

In all seriousness and with a genuine desire to know the answer, what do you think of parents who abort pregnancies after receiving the results of prenatal testing? I had amnio and would have terminated a Down's syndrome pregnancy. I am not at all prepared to care for a child with mental impairments. I am, however, very interested in your perspective on this issue.

Karen said...

I am seriously interested in knowing what you think of parents who abort pregnancies after receiving bad news from prenatal testing?

Cara Liebowitz said...


It's a tricky thing. I am solidly pro-choice. But I think that the way society portrays disability has a lot to do with why pregnancies are terminated after receiving a diagnosis of Down's or other genetic conditions. The fact is, raising children - ALL children - is difficult. And you can't really say you're prepared for something until it's happening. I mean, how many mothers would say they were prepared for motherhood before having their first child? How many of those expectations changed?

If you truly, honestly feel like you can't handle having a child with a disability (using you in the general sense here), adoption is always an option. There are many families out there who are looking to adopt kids with all sorts of impairments. I hope to adopt one or two myself someday. But there are no guarantees. Disability is the one minority that anyone can join at any time and a good 98% of disabilities are not detectable in the womb. I mean, look at me - I was born premature and have CP from lack of oxygen during birth. There's no way anyone could have predicted that beforehand in time for an abortion. So even if you take steps to try and make sure you don't have a disabled kid, you very well might end up with one anyway.

Sorry if this seems a bit rambly :)

Karen said...

Your response was well-reasoned and thoughtful. I have noticed that several Down's advocacy groups have stared publicity campaigns to show that, among other things, there are degrees of disability.

FWIW, I used to work with the Texas Accessibility Act -- a law which requires builders to construct public accommodations in a manner that makes them as accessible as possible. That work was illuminating; I suppose I was vaguely aware of wheelchair access needs, but that work taught me to be aware of things like the size of print and location of bathroom signs for people with limited vision.

Also, many apologies for double-posting.

Anonymous said...

I've been agreeing with most of your blog but I don't agree with this post, because grief doesn't always mean that someone died. Grief is about loss of all kinds - loss of a relationship, a job, an aspect of one's identity, a home, even for a specific hope for the future. A person can even grieve the BIRTH of a child (even a healthy one), if it's an unplanned child who will require a great deal of sacrifice. The stages are the same in all these cases. In fact, the stages of grief were first written about in regards to people's reactions to finding out they're terminally ill; they're grieving the loss of a future life that was as nonexistent as the so-called "normal" child you refer to here. Would you tell a terminally ill person that they're not allowed to grieve the loss of all the years they will never live to see, just because those years never existed in the first place and were merely hoped for?

Anonymous said...

I have to disagree with your sentiment here that one cannot grieve if no one has died. Grieving is not mourning. The definition of grief is "deep sorrow, especially that caused by someone's death," but "especially" does not mean "solely" or "only" — just that's it more typically related to death. But there are many things one can grieve: the loss of a job... the end of a relationship... the concept of a healthy child...

So if you restrict your connotation of grief to just its core "deep sorrow" that would seem to fit into your "it's okay to be sad. Sad that your child will face a more difficult path than most. Sad that the world may never see them as full human beings," that would be apt, no?

Anonymous said...

Grief is NOT isolated to death.

Ettina said...

Karen, personally, I see no difference between aborting a child because prenatal screening detected Down Syndrome, and aborting them because prenatal screening indicates they're going to be female.

Ettina said...

Regarding the comments that grief is not isolated to death - true. But grief is isolated to loss. And if you never had a normal child to begin with, you haven't lost anything. The only reason it feels like you have is because so many people assume their child will be nondisabled and feel that a disabled child is somehow less valuable.

If a person grieved because their child came out as gay, I'd suspect they had some homophobic views. Now, I would still be sympathetic, but I'd hope that they would take a good look at why they think having a gay child is something to grieve over rather than just taking it for granted.